Feria de Salud #PorTuFamilia (The Campaign to STOP Diabetes)

Did you know? 

• An estimated 1.3 million adult New Yorkers (almost 1 in 8) now have diabetes.
• Almost 28% of Latinos and Hispanics in the New York City market, and 31% of African American New Yorkers, have diabetes. 
• In New York City during 2007, 22 African Americans and 23 Latinos of every 100,000 died from diabetes.

I worry about diabetes. The Husband's parents are both diabetic and so is my grandfather. There is also a family history of obesity, heart disease, cholesterol and high blood pressure.   

The Husband is over 40 years old and has been on medication for high cholesterol on and off for the last five years. Being the parents of a special needs child, our personal health is of the utmost importance. We want need to live for as long as we can and be as healthy as possible.

We need to EDUCATE ourselves and modify our lifestyle and eating habits.

We need to teach The Boy how to eat and take care of himself so that he isn't at risk for diabetes.

George Torres aka the @UrbanJibaro of Sofrito for Your Soul has started the social media campaign #PorTuFamilia to raise awareness about Diabetes in the Latino Community. And this Saturday in The Bronx there will be an amazing family friendly event.        

***

Saturday, August 17, 2013
11:00 a.m. to 6:00 p.m.
St Mary's Park 146-148 Street St. Ann's Avenue, Bronx, NY

Feria de Salud is an outdoor community event, that reaches thousands of Latino/Hispanics with the important message that they may be at risk for diabetes. Feria captures the festive elements of a street fair, but maintains the important aspects of choosing and managing a healthier lifestyle for the entire Latino family. Join us for free health screenings, live music and dance, cooking demonstrations, children activites, healthy information and more!

For more information on diabetes please visit - www.diabetes.org

Maybe...He Has Autism

Autism Speaks has just launched a new campaign targeting the Latino community to raise awareness. And I am grateful. When The Boy was first diagnosed, I had no idea what autism was. I didn't think it could happen to us.

Earlier this week we "celebrated" our 5 year autism anniversary.

Five years ago there were so many maybes.

Maybe he's just being a boy.
Maybe I'm not doing enough.
Maybe he'll talk tomorrow. 
Maybe he's not ready. 
Maybe I'm worrying for nothing. 

There were too many maybes and too many people whispering them in my ear.

I started blogging because I could not see a family that looked like mine in any book I read. Autism, any kind of disability, isn't something Latinos openly talk about. We have been conditioned to be ashamed of it. To keep it to ourselves. We are scared of the label.

When The Boy was first diagnosed my mother couldn't believe it. "El no es asi," she said. (He is not like that.) And then she said that I shouldn't tell anyone. But it's important for parents to talk about. We need to feel like we are not alone.

We cannot expect communities to be accepting if we are not open. If you have any maybe in your head - go to your doctor, ask for a referral to a specialist. 


I don't always agree with Autism Speaks, I'm not looking for a cure for The Boy. I want him to be understood. I want our community to recognize the signs of autism. To accept it. And to get the services they need.

The New Generation Latino Consortium: Media, Marketing and Entertainment Conference

Tuesday April 2, is the New Generation Latino Consortium's (NGLC) Media, Marketing and Entertainment Conference and I am honored to be invited to attend. I'm eager to listen and learn from the experts in the industry. Attending this conference provides the opportunity to interact with Fortune 500 executives, top NGL media outlets, general and Latino market ad agency executives, celebrities and invited press outlets.

    

The NGLC is "the only organization dedicated to educating and informing the business and entertainment worlds about the importance of the New Generation Latino (NGL) market."

At a pivotal time where a new foundation is being set for our industry, the NGLC’s mission of embracing the Total Latino Market has never been more poignant.  We’ve been openly leading this conversation for over a decade with our signature events being a must-attend for those eager to participate in a fresh discussion about the tremendous Latino business opportunities that exist across media, marketing and entertainment. David Chitel, NGLC Chairman & Founder.

Past speakers include Soledad O'Brien, John Leguizamo and Rosie Perez. This year's conference promises to be exciting.  And I'll be tweeting throughout - so be sure to follow me @LaliQuin.

Just to give a little taste...panel discussions will feature (and be moderated by) executives from the Latino advertising, marketing and entertainment communities including: Sergio Alcocer (President & CCO, Latinworks) Tanzina Vega (Reporter, NY Times), Richard Pleplar (CEO, Home Box Office),  Peter Castro (Deputy Managing Editor, People), Rene Alegria  (CEO, Mamiverse Media), Lin-Manuel Miranda (Tony Winning Composer/Lyricist/Actor – In The Heights), and Lisa Garcia Quiroz (SVP, Corp. Responsibility & Chief Diversity Officer, Time Warner). And there will be a  celebrity sit-down that includes singer/songwriter Prince Royce and Taboo of the Black Eyed Peas. You can see the full agenda/speaker/moderator list - HERE.   

If you've been following this blog for a while, you know I'm a secretary by day, grad student/writer by night and mami round the clock. Earlier this week, I posted my 500th blog post inspired by Sheryl Sandberg's Lean In. And if this isn't a Lean In opportunity, then I don't what is...

For more on NGLC check last year's event here. And be sure to follow them on Facebook and Twitter @NGLConsortium.

  

*Disclaimer: I am provided with a complimentary ticket to the event. All opinions are my own and have not been influenced in any way.   

Latina Bloggers React: We Need More Hispanic Authors and Books. Our Stories Matter.

In response to the New York Times article about the lack of Latino authors and books for children, Latina bloggers have launched the "Latinas for Latino Literature" campaign which works to identify the problems in today's publishing world that contribute to this lack of diversity.  In a series of posts we will not only share our personal experiences within the publishing industry, but provide ideas for changing the situation to benefit Latino readers and writers, as well as the industry itself as they tap into this growing demographic. To help the publishing houses and readers, we're providing our top picks of Latino/a writers - and we're not done. Look out for forthcoming Google hangouts, Twitter parties, and follow-up posts as this coordinated effort continues, working towards providing quality books for an emerging group of readers.

Reading the NYT's article made me think about so many things: my childhood, my own writing and the limited selections at bookstores. So a few of us Latina bloggers decided to make our voices heard. As writers, mothers and lovers of all literature we want publishers, marketers and booksellers to know that Latinos read, write and buy books. We want them to know that OUR STORIES MATTER. 

I grew up in a home filled with books. Not because my parents were big on reading but because my father worked in a book factory. We had every children's book imaginable. And while we didn't have a lot of money, seeing books on our shelves made me feel very rich. 

Growing up my favorite writers were Beverly Cleary and Judy Blume. I read book series like Nancy Drew, Sweet Valley High and the Baby Sitter's Club. I read all the time. Out of enjoyment, boredom, loneliness. I was that nerd girl whose nose was always in a book. I grew up reading about people I could not identify with and neighborhoods that didn't look anything like mine. 

I didn't realize I was missing something. And even though I grew up in a home filled with books not a single one was written by or about a Latino. I simply took for granted they did not exist. I assumed our lives were not worth reading or writing about. 

I will never forget the first time I read a book written by a Latino author. I was twenty years old. It was Esmeralda Santiago's When I was Puerto Rican and I read it in less than two days. It was empowering. I knew I needed to seek out other Latino authors (I say seek out because this was the age before Google). Esmeralda Santiago made me realize that our stories matter. And she inspired me to start writing.

At the time I discovered Esmeralda Santiago and Latino Literature, I was a failing college student. I didn't believe I was good at anything. I was working two jobs and I hated them both. And I didn't feel positive about my future. The next semester I  took an intro course in creative writing. I wrote my first short story and handed it in thinking it wasn't any good. On the day the professor returned our stories, I walked in twenty minutes late and as soon as I stepped in - the class started clapping. (For me!) The professor had been praising my work and called it the best submission she received. It was the first time any teacher had ever told me I was the best at anything. That was my academic turning point.    

Latino Literature opened a door for me that I didn't know existed.   

Now as a graduate student pursuing a Masters of Fine Arts in Creative Writing, I've met professors and editors who have told me that it will be more difficult for me to become a published writer simply because I'm Latina. While it's discouraging, I know I will not give up until my name is in print. I believe in my writing. And I know my words matter.    


When I was pregnant with The Boy, I knew I wanted him to love literature. I knew I wanted his children's books to be a reflection of our culture. I want my son to grow up knowing Latino writers exist and that our stories matter.   

But it is so disappointing to walk into a bookstore and not have a selection of books (children's or adult) written by Latino authors to choose from. I don't live in a small town. I live in New York City. And one shelf in a major New York City bookstore is not enough. In all honesty, it's not enough regardless of where you live.

When I think about all the kids in my life who think reading is boring - I know it's because they haven't read a book that spoke to them. I know the right book could make them realize that reading is exciting and that learning through literature can be fun. All it takes is one good book to change a life forever. I know because a book changed mine. 

What Latin@ author and/or "mainstream" author most influenced you and why?


What YOU can do to help?

• BUY - not borrow - books written by Latin@ authors. Money talks.
• If you enjoy a book written by a Latin@ author - post a review on Amazon or Barnes & Noble.     

What I Would Have Loved To Read Growing Up:

• An Island Like You by Judith Ortiz Cofer
• When I Was Puerto Rican by Esmeralda Santiago
• The House on Mango Street by Sandra Cisneros

What I Read To My Son: 

• Love To Mama: A Tribute to Mothers Edited by Pat Mora. Illustrated by Paula S. Barragan M.
• On This Beautiful Island Written and Illustrated by Edwin Fontanez
• Arroz con Leche: Popular Songs and Rhymes from Latin America Selected and Illustrated by Lulu Delecre

Do I Have the Right to Blog about My Kid with Autism?

The Husband taking a picture of me taking a picture of me & The Boy. Both pics were uploaded to Instagram.

I have plastered my son's face all over Facebook.

I've Tweeted his scripts and Instagramed his antics.

I've added text to his pics and pinned them to Pinterest and G+'ed them too.

For the last two years, I have lived our lives via my blog. Sharing my joys. My sorrows. My fears. The stress of parenting a kid with autism and all of my added angst.

I have pushed my kid out of the special needs closest without even asking him. Or my husband for that matter.

And yesterday someone asked me the question:

Does your son know you are blogging about him?  Is he okay with it?

And I can't tell you how often I've asked myself: Do I have the right to blog about him?

I remember last year when The Boy was in that horrible school and they were all reading my blog, picking my words apart to use them against me. I questioned whether or not I should continue blogging. I questioned if it was worth the risk. 

When I first started this blog, I started it as a class assignment. I wasn't thinking about comments or tweets, page views or pins. I never thought my son would become a "face of awareness."

I just wanted to share our journey. I wanted to write the posts, I would appreciate reading. Posts that were realistic to me and our life.

I've had conversations with other parent bloggers about this - our right to blog about our kids and the impact it will have as they grow up. It's not a decision any parent blogger takes lightly - especially when a child has a disability.

Some bloggers are anonymous and reveal no photos of their children. Others change their names and share some photos of their families, and only from certain angles. And others - like me - have their real names and faces all out for the world to know.

I can't speak for any other blogger except myself when I say I know why I am so open about Norrin's (aka The Boy) autism. 

I'm a writer. I was fiction writer before Norrin was born. And being an autism mom has simply given me another subject to write about. 

I write openly our life with autism because when Norrin was first diagnosed, I didn't know a single person raising a kid with autism. I didn't even know what autism was or how greatly it impacted the Latino community.  

Every single book I read about autism was written by  upper middle class (white) women who were able to quit their careers to become stay at home moms. Many of these women were married to white collar men, they lived in nice homes with backyards, in neighborhoods far far from mine. 

I found myself comparing my life to theirs and feeling like a failure. And I felt like if these people with money and means struggled for services - what chance would my kid have? When Norrin was diagnosed with autism, there was never the option for me to quit my secretary job. And there was never the option for Joseph (aka The Husband) to quit his FedEx job. There was no way we could move to another neighborhood. We had to just make it work within our means.

So we scheduled some of our therapy sessions at the playground and when the weather was bad, we used the apartment building hallway for additional therapy space. And when it was time to sue the Board of Education, we didn't have the money to hire an attorney, we went on our own. And won. Twice.

There is so much stigma about autism. And within the Latino community - autism is not something we are openly talking about or writing about. Latino children are going undiagnosed because parents do not know or understand what to look for.

I write openly because I want others to know the signs of autism. And I use my son's pictures because I want people to see a real face. I want them to know that my son, Norrin, has  autism. And he's okay. We're okay. I want people to see all the amazing things my kid can do and I want them to understand him without judgement.

But do I have that right? 

Well, I'm his mother. And as his mother I wouldn't want to do anything that will cause him any kind of harm or humiliation. I believe I share things about my son that are respectful to him.  

I've shown him the pictures I've posted but right now, I don't think he has the cognitive ability to understand what any of it means. But when he does, we will sit down and talk about it. And I hope he will understand why I've been so open about our lives. And I hope he will be proud to know that his face, his life, his words have made a difference. 

 ***

Please follow me over at Atypical Familia. 

The Reality of the Latino Vote

Are you wondering about the breakdown of the Latino vote?

There's been a lot of media coverage about why Latinos voted for Obama. I mean, I know why I voted for him.

I live in The Bronx - a borough with a significant Latino population. And on Election Day, The Husband, The Boy and I went out to vote as a family. (Don't worry, there was no voter fraud funny business - The Boy didn't vote.) And when we reached our polling site, the line wrapped all around the block. (It was pretty cold that night. I wasn't wearing socks.)

There was a guy who came behind us and was annoyed by the length of the line. He said something about it being bad. And The Husband turned around and was like "Are you kidding? This is great! Every election should be like this."

The Husband is right. (I may live to regret writing those words.) EVERY single election should have the same turn out. We should always have to wait on block long lines to vote - not only every four years. 

Because when Latinos show up at the polls - we are a force to be reckoned with. There is power in numbers people. The GOV better recognize!

So how did Latinos vote? Check out LATISM's cool infograph breakdown:

 

September is World Alzheimer's Awareness Month #EndAlzNow

Today is my birthday. I am one year older - officially late 30s. (Or as The Husband calls it, "the wrong side of 30.") And I worry about getting older more and more. I want to try to live for as long as a I can and to be healthy for as long as I can.

Part of trying to live forever is being aware and trying to take care of myself now. I know I need to lose weight, eat better, brush my teeth twice a day and remember to floss - these are all things that will help improve/maintain my overall health.   

But I also worry about Alzheimer's.  Both of my grandmothers had it.

I remember how sad it was seeing my grandmothers and have them not remember me. Even though they both lived with us for significant amounts of time. It was sad that when I saw them, I could no longer communicate with them because they had both lost the ability to speak English. They lost all track of time, forgetting where they were and who they loved. Alzheimer's robbed both of my grandmothers of their memories. And it was extremely difficult for my family.   

I don't want The Boy to experience that kind of pain. (He may not even be able to understand.) As his mother, I always want to know who he is. I don't want to be robbed of any of my memories of him.

I worry about my parents - they are both over 60 years old. Will the day come when they no longer remember me or my siblings? Will the day come when they no longer remember The Boy? The Boy is their only grandchild and he is extremely attached to them, especially my mother. 


The Boy with my parents

I am at the age, where I've experienced the loss of loved ones. I am at the age where some of friends have already lost their parents and I have mourned with them.

I want my parents to be healthy and live for as long as they can. Which is why I've registered for the Alzheimer’s Prevention Registry. 

What's the Registry?

It's a community of people interested in making an impact on Alzheimer's research to help stop the disease. The goal is to keep enrollees informed of the latest news and advocacy to drive focus on Alzheimer's.

Who is eligible for the Registry?

The Registry is open to anyone 18 and older. 

How do I join the Registry? 

It's quick and easy! Just visit www.endalznow.org to sign up. By signing up, you will have access to information and resources about what’s being done to fight this disease. (You might also be asked to be part of a research study, which is always your choice and you have no obligation to be part of!)

KEY POINTS on Alzheimer's

• Alzheimer’s is the most common form of dementia and is not a normal part of aging
• Alzheimer’s is the 6th leading cause of death in the U.S. And the only one of the top 10 causes of death that cannot currently be prevented, treated or cured
• 5.4 million Americans are affected by Alzheimer’s, and someone is diagnosed every 6.9 seconds

KEY POINTS on Alzheimer's and LATINOS

• Latinos are one-and-a-half more likely than whites to have Alzheimer's but are less likely than whites to receive a diagnosis. The average age when initial symptoms appear in Latinos is 6.8 years earlier than in whites.
• The number of Latinos with Alzheimer's and related dementias in the United States could increase more than six-fold by 2050, to as many as 1.3 million cases from fewer than 200,000 today..
• Age is a major risk factor associated with Alzheimer's and life expectancy for Hispanics will increase to age 87 by 2050 - surpassing that of all other racial groups in the nation.

For  More Information on Alzheimers  

• Alzheimer’s vs. normal aging - http://www.banneralz.org/physicians-plus-referrals/symptoms-plus-diagnosis.aspx
• Alzheimer’s vs. dementia, and prevention - http://banneralz.org/patients-plus-family/alzheimer's-what-you-need-to-know.aspx
• Alzheimer’s Prevention Registry - http://endalznow.org/

* This is a sponsored post in collaboration with The Motherhood and Banner's Alzheimer's Institute. All opinions, ideas and stories are my own. 

Tonight I Will Laugh

Tomorrow is the National Puerto Rican Day Parade in New York City.  But since we a are a party kind of people - we start the celebration before and continue well after!  Tonight I'll be celebrating at Caroline's Comedy Club for the 4TH ANNUAL PUERTO RICAN FREAKIN WEEKEND COMEDY SHOW starring Mark Viera, Cipha Sounds, and the countries funniest comedians.

And after yesterday's disaster,  I could use a few hours to relax, let loose and laugh.   One of the great things about tonight is that I'm going with The Husband - like a real deal DATE NIGHT!  Something that is a rare occurrence.   


It's not too late to buy tickets if you want to celebrate with me :)

Bleach is For Cleaning, Not Curing.

When The Boy was first diagnosed with autism, I really believed he could be "fixed."   I wanted to make him normal.  (I think most parents go through that phase.)  I tried diets, I researched and read different books.  And for a hot second, that damn Jenny McCarthy made me feel guilty for not taking The Boy to a DAN! doctor.  

For many parents, it's about trial and error.  We are willing to try (almost) anything and everything if it means helping our kid.

But when will a parent draw the line? 

I know where I would draw that line.  I'll get back to that... 

Over the last few weeks, this article about the Autism One conference and Kerri Rivera (Director of Autism02 - Hyperbaric Clinic in Puerto Villarta, Mexico) has been making its way across the blogosphere.

And it's been making its way for good reason. Rivera claims that she has helped children recover from autism with something called Miracle Mineral Solution (MMS). 

So what is this little miracle?  

...in essence, [MMS,] is industrial strength bleach, 28% sodium chlorite in distilled water. It is frequently diluted in acidic juices, such as orange juice, resulting in the formation of chlorine dioxide, which is, as the FDA characterized it, “a potent bleach used for stripping textiles and industrial water treatment.”

And Rivera's treatment involves giving autistic children MMS via mouth or enema.  She also suggests periodically increasing the dosage and bathing in the solution.  (The article goes into great detail and provides video of Rivera detailing the process.)

In a 2010 CNN article, the FDA warns against usage of the solution as they have "received numerous reports of serious side effects including nausea, vomiting, diarrhea, and life threatening low-blood pressure from dehydration."  Though Rivera dismisses diarrhea as "OK as long as it's detox diarrhea.'" 

So where would I draw the line?  Hmmmm somewhere around bleach and enema.  Because it sounds...I don't know?  SADISTIC, CRUEL and Motha EFFIN CRAZY!  

For me, the worst part about this whole thing is where Rivera started her clinic - in Puerto Vallarte, Mexico.  While Puerto Vallarte may be a fab vacation hot spot, it's not all resorts and margaritas for the people who live there.  

Although Puerto Vallarta is probably one of the best places to live in Mexico, some areas are still riddled with poverty and unsanitary conditions. Outside of the strip of resorts, there is an overwhelming amount of people living in very poor conditions.  A large part of the population here live with unpaved roads and lack of infrastructure. Rural areas and surrounding towns are lined with miles of shanties where many live without proper sewage systems and clean water supply. Of the 45,000 year round nations living in PV, 10% do not have a potable water supply, 8% do not have connections to a sewer/septic system, and 4% do not have electricity. Although the city has made impressive strides to improve the quality of life for their people, they still have a long way to go. For many, life is still a constant struggle, and it’s seen everywhere, even on the Malecon where sad looking beggars plead with a small cup as the tourists walk by. Even for those working, they heavily rely on seasonal tourism to keep a steady job, and the daily minimum wage is about 57 pesos, which is about $5 US a day! [source - this passage is from a personal blog, it is her description of life while living in Mexico]

If parents complain about the system and services in the United States, I can only imagine how scarce resources are in Mexico.  I can understand how MMS can truly seem like a miracle to a parent in Mexico.  Because when you have a child with autism, a parent is willing to try anything you think may work.  And when resources are limited or non-existant or completely out of your financial reach, the line may be harder to draw.  

But MMS isn't exactly the option I'd want them to have.  And sadly, for many low income impoverished families - MMS is probably the only option they have since Rivera uses "fundraising efforts and donations the clinic offers treatment for children of low income families at no charge."

There is so much stigma that surrounds autism - especially within the Latino community.  We don't talk about.  We're ashamed of it.  We're scared of it.  We dismiss it.  And now Rivera- claims to be able to "cure" it.  As if autism is something that could be treated with un remedio casero (a home remedy).  In my opinion, that's a dangerous message to send. 

I want to be supportive of Kerri Rivera for starting a much needed autism non profit in Mexico, for raising awareness, for empowering families. 

And I want to believe that Rivera wants to really help and that she's not exploiting poor children and using them as guinea pigs to gain fame in the States. 

But to me, all Rivera is doing is, creating a false sense of hope for many families.  And she's putting children at risk.  

I want those families in Puerta Vallarta to know they have other options.  How do we do that?          

       

  

****

 

Emily Willingham has started this petition below.  Please sign it.   

 

http://www.change.org/petitions/no-bleach-enemas-to-cure-autism-in-children

 

"Let's Talk About Autism" Radio Capicu Blog Talk Radio Recap

Last month while at Hispanicize, I met George "Urban Jibaro" Torres, founder of Sofrito Media Group.  Both Boricuas from New York, we immediately clicked - we even knew some of the same people.  So when George asked me if I was interested in participating on his Blog Talk Radio Show - Radio Capicu, "Let's Talk About Autism" - I didn't even hesitate.


Even if that meant taking a break from the Top Blogueras Retreat.  Connecting with the Latino community about autism was the very purpose of this blog.  


Today I had the chance to listen to the show.  And it was incredibly moving for me.  Listening to the other parents share their stories.  Also on the show was Veronica Vasquez-Jackson and Stuart Chaifetz. 


The show really made me think.  It sparked some topics for blog posts.  It made me realize that Latinos want to talk about autism - they just need the opportunity to do so.   


You can listen to the show by clicking the link below and/or it can be downloaded to your iTunes for Free.  That's how I listened to it.

 

Listen to internet radio with Radio Capicu on Blog Talk Radio

Here are some links that I talked about while on the show: 

Part 200 (Student with Disabilities) and Part 201 (Procedural Safeguards for Students with Disabilities Subject to Discipline) -- This has been extremely helpful; it is a PDF of the Regulations of the Commissioner of Education. (I found the link here.)  The document is long (about 200 pgs) but it's important to look through.  It goes through Due Process Procedures and the Board of Education Responsibilities and Definitions. I've noted sections in letters to CPSE administrators.  Let them know that you know the law. Please note there is a  disclaimer: These Rules of the Regents and Regulations of the Commissioner of Education ("regulations") are unofficial, and are presented for general informational purposes as a public service. 

Queens Parent Support Group - http://www.qcpac.org/

For more local resources please visit my NYC Resources page. But please keep checking back - I have LOTS of updating to do.  

April may have been Autism Awareness Month, but for us it's Autism Awareness every day.  Thank you Radio Capicu for helping spread awareness and for allowing your listeners to share their stories.